Good follow up visit with my doctor

[sleepysouth]

I got a lot of questions answered today! My doctor is board certified in Sleep Medicine and a diplomat of the American Academy of Sleep Medicine. The group I go to has a websiter where I can find out all about his qualifications. I now have an offical diagnosis: UARS.(Even pre-CPAP treatment, my AHI was only 0.4 per hour in total sleep time.) I also left with copies of the reports on both my sleep studies. (One with a graph, one without.) We talked about using pulse oximetry, since oxygenation was my primary problem pre-CPAP. (Also some arousals and soft snoring.) He said that oximetry wasn't nessecary, given that treatment with a CPAP brought my oxygenation up to 92 percent at the very lowest, eliminated my snoring entirely, and gave me much more REM sleep for longer periods. He also explained that higher CPAP machine models wouldn't nessecarily monitor what he was interested in watching (though he was open to my input. "Is there one you heard about, one you had in mind?" he asked me.)

Best of all , after I brought up the fact that I wasn't totally comfortable in my mask, he had me try on a few others and readily wrote me a new prescription for my DME. I'm going to the Respironics FullLife FF now. The idea of no pressure points and a free line of sight really appeals to me. (Yes, I am claustrophobic, although I'm better at controlling it than I used to be.) I had no idea that getting a new mask or machine could be that easy. I'm within my 30 day limit too, so my DME won't charge me for the change in masks.

I feel very much better informed, and now I know where to start researching. Isn't it wonderful to have a name for what's wrong!

[sleepsurfer]

what pressure did your doc prescribe? are you adapting well to cpap? my pressure is 7cm but i am starting to inch it up now....also after about a 6 days, 2 hours without waking is my longest stretch.

[sleepysouth]

I'm pnly prescribed 5cm, and I often use my ramp button when I first go to sleep to get used to even that much pressure. (4 cm is the lowest my machine can deliver.) I also take 2 different sleep medications, so that may account for how much longer I am able to sleep. Honestly, my problem was never length of sleep--I usually got 8 or 9 hours, although it might take me a long time to calm down and get to sleep. The problem was that I would sleep for 8-9 hours, sometimes even more, and still feel tired/irritable/doze off during the day. And I never dreamt.

I have been on CPAP now for about 2 weeks, feeling much more refreshed and dreaming more, although I understand from the site that it's still early in terms of feeling a difference. We don't all adjust in the same period of time, and even when we do find something that "works", we may have to tinker with it down the line. Hang in there!

[DoriC]

Sounds like an interested Dr. I don't know your full medical history and I'm certainly not a Dr, but I was wondering about the 2 sleep meds you take and whether they could be causing any problems with rebound daytime sleepiness? I'm sure your Dr is aware of that, but just a thought? Good luck and keep us updated. Dori

[rested gal]

Welcome to the message board, sleepysouth!

While you're still in your first month of having received a machine, I'd go back to the people who gave you the machine and ask to swap it for the M series REMstar Pro cpap. The "Plus" they gave you (the DS100 listed in your equipment profile) records only hours of use. "Hours of use" (compliance) is usually the only data from a machine that a doctor or DME are interested in seeing, because usage is all the insurance company or Medicare are interested in.

The Pro will record hours of use AND some much more useful data -- particularly leak data. The DS100 (the "Plus" model) cannot give you any leak data at all.

This comment by the doctor -- "higher CPAP machine models wouldn't nessecarily monitor what he was interested in watching" -- is seemingly a pretty common attitude among sleep doctors. The sleep doctor is interested in looking at sleep study results where a lot more is being monitored than what any cpap machine, no matter how many bells and whistles it has, can look at.

And that's true. He's seen MUCH more information from your sleep study than any treatment machine could give him. For that one night. Or two nights if a separate night was scheduled to find a good treatment pressure.

What neither he, nor the home health care people who download the Smart Card later for "compliance" info, nor you, get to watch is how you and your mask are faring leak-wise. To me, that's one of the most important things to know about. And it's important to know about that very early on in treatment.

For that reason alone -- to get leak data -- I'd want more than a barebones "hours of use compliance data only" machine. I'd want the Pro instead of the Plus. The Pro is exactly the same machine as the Plus, but the Pro gives more data. The Pro can show leak and AHI data.

Now's the time to make the switch.

[Muse-Inc]

Getting a full data (efficacy) reporting machine is the ONLY way to go as far as I'm concerned. I have a dumb compliance-only machine...it works and works well BUT I have no way of knowing if I had events overnight or whether I had leaks that cancel the effectiveness of CPAP therapy. I have no way of watching long-term trends in my nightly events to determine if changes are needed. It's really frustrating to me to not have this data. I've been on CPAP since August 20, 2007 and really wish I'd known to get an efficacy data machine from the beginning. Without data, you cannot monitor your therapy or tweak to make improvements.

[sleepysouth]

Rested Gal-

What you say about watching for leaks makes a lot of sense. That's something I can do, and adjust the way I wear my mask accordingly, if need be. I just called the sleep doc's nurse and asked for the Pro, explaining the time constraints (giving her the exact date I got my current machine) and my reason for wanting the Pro. (Thank goodness I had this screen up to make myself succinct!) Doc was not in this afternoon, so it probably won't get done by tomorrow.

Sounds iffy--I may or may not make it by Sept 18, which would be my 30 days. But, I will have tried. Now, off to call my DME and see what they have to say-at the very least, to put them on the lookout.

Sleepysouth

EDIT: After talking to my DME, I have found out that, if the doc writes a scrip for a new machine, my insurance will pay for it. Period. 30 days or not. And I am not looking at more cost, regardless. (Unless I go to a BIPAP down the road, or something.) All I can say is--wow, am I lucky. Medicare doesn't usually work out in my favor like that.

[jules]

SS has the basic - no card even - just number of nights over 4 hours of use.

I think SS needs frequent pulse ox monitoring. The problem wasn't OSA but UARS with a low AHI but also low O2 sats. I chatted with them the other day and suggested the Pro as well as the oximeters. I also mentioned the leak issue which you get some information on with the Pro and none with the basic or the Plus.

I would also agree with DoriC about the sleep meds causing rebound daytime sleepiness. SS has some other health issues and hopefully they can discuss this with their doctor and possibly start a taper down of at least one of them. As long as the meds are there, I suspect there will always be some daytime sleepiness - jmo.